"Pediatric sexual orientation and gender identity data collection in the electronic health record" was recently published in the Journal of the American Medical Informatics Association. Authored by Hilary Goldhammer, Chris Grasso, Sabra Katz-Wise, Katherine Thomson, Allegra Gordon and Alex Keuroghlian, this article highlights methods that pediatric primary care organizations can use to collect and document sexual orientation and gender identity information with children and adolescents in electronic health records.
New Study Published: City-level Structural Stigma and Patient Sexual Orientation and Gender Identity Data Collection at U.S. Health Centers
A study published in the American Journal of Public Health found that federally qualified health care centers located in municipalities that implement LGBTQIA+ non-discrimination laws collect more complete sexual orientation and gender identity (SOGI) data for patients than those located in municipalities that have not enacted LGBTQIA+ non-discrimination provisions. It is the first study to demonstrate an empirical relationship between SOGI patient data collection and the larger societal conditions, cultural norms, and institutional policies that adversely affect LGBTQIA+ people. The study contributes new knowledge to the growing body of research around stigma and discrimination and the health of minoritized populations.
“We have known for some time that collection of patient SOGI data is essential for improving health care access and quality for LGBTQIA+ people. Despite this, these data are still not routinely collected,” said Dr. Alex Keuroghlian, senior author of the study and director of the National LGBTQIA+ Health Education Center at The Fenway Institute and the Massachusetts General Hospital Psychiatry Gender Identity Program. “This study finds that structural anti-LGBTQIA+ stigma is clearly associated with incomplete and inconsistent patient SOGI data collection in federally qualified health centers. It also highlights the importance of municipal non-discrimination provisions and social environments that are welcoming and affirming of LGBTQIA+ people.”
“City-level Structural Stigma and Patient Sexual Orientation and Gender Identity Data Collection at U.S. Health Centers, 2018” used the Human Rights Campaign’s Municipal Equality Index to quantify city-level structural stigma against sexual and gender minority people in 506 cities including the 50 state capitals, 200 most populated cities, the five most populated cities in each state, cities home to each state’s two largest public universities, and 75 cities with the highest proportion of same-sex couples. Structural stigma is collectively defined as the societal conditions, cultural norms, and institutional policies that adversely affect minoritized populations such as LGBTQIA+ people. Prior research has shown that structural stigma is associated with identity concealment, poor health behaviors, psychological distress, and psychiatric morbidity across numerous minoritized populations, including LGBTQIA+ people.
SOGI patient data collection was then examined in federally qualified health centers located in the cities included on the Human Rights Campaign’s Municipal Equality Index. Federally qualified health centers are required to collect patient SOGI data, but approaches to data collection are highly variable, ranging from self-reporting at intake to collection by frontline staff and caregivers. An examination of first-year SOGI data reporting by federally qualified health centers found that sexual orientation data were missing from 77 percent of patients; gender identity data were missing from 62 percent.
The Human Rights Campaign’s Municipal Equality Index measures five domains: presence or absence of a non-discrimination law, municipal policies for LGBTQIA+ employees, inclusivity of municipal services, proactive law enforcement outreach to LGBTQIA+ residents, and leadership on LGBTQIA+ equality, such as public statements and support for legislation. Only one—the enactment of laws and ordinances prohibiting discrimination against LGBTQIA+ people—was significantly associated with more complete collection of patient SOGI data.
“It’s notable that non-discrimination laws were significantly associated with better SOGI data collection. After The Office of the National Coordinator of Health Information Technology (ONC) required electronic health record to have designated fields to record a patient’s SOGI, we began to see an increase in SOGI documentation in health care organizations. These are powerful examples of how of policy can have a significant impact on an often invisible and underserved population,” said Chris Grasso, study co-author and Associate Vice President for Informatics and Data Services at Fenway Health. “These findings suggest that enforceable SGM-inclusive laws are more strongly associated with stigma alleviation and SOGI data collection than more voluntary practices and symbolic representations of SGM inclusivity.”
“City-level Structural Stigma and Patient Sexual Orientation and Gender Identity Data Collection at U.S. Health Centers, 2018” is available online (https://ajph.aphapublications.org/doi/10.2105/AJPH.2021.306414). It was authored by researchers at The Fenway Institute and Massachusetts General Hospital (Harvard Medical School).
New Journal Article: Optimizing gender-affirming medical care through anatomical inventories, clinical decision support, and population health management in electronic health record system
A paper published in the Journal of the American Medical Informatics Association provides detailed guidance for making changes in electronic health records that will improve the quality of care of patients who are transgender and gender diverse. Authored by leading educators and clinical experts on LGBTQIA+ health care from The Fenway Institute, Fenway Health, and Massachusetts General Hospital, the paper builds on previously published guidance from The Fenway Institute and Fenway Health on how to develop and integrate transgender health programs within existing primary health care practices and how to create culturally responsive health care environments for LGBTQIA+ people.
A New York Times article published on May 7, 2021 highlights how lack of collection of data on sexual orientation and gender identity may cause LGBTQ people to be unseen in vaccine rollouts. National LGBTQIA+ Health Education Center Director, Dr. Alex Keuroghlian, says "The reason we need to do data-driven, culturally responsive outreach is that medical mistrust — and along with that, vaccine hesitancy — among L.G.B.T.Q. people is rooted in the stigma and discrimination that this community has experienced over time." The online version of the article is here.
LGBTQIA+ people have been undercounted on the Census for too long. The Census directly affects how billions of dollars in federal funding for social and health services will be distributed. The 2020 Census is our chance to ensure that LGBTQIA+ communities receive their fair share of political representation and funding for the next decade. You can complete the census at www.2020Census.gov.
Advancing Excellence in Sexual and Gender Minority Health is a national CME course developed in response to a high volume of queries from clinicians and health care staff seeking to learn about providing high-quality care for patients who identify as a sexual or gender minority.